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to act now out of love “…in the face of absolute improbability because it doesn’t matter: you do whatever the hell you can” to make things more open than they are.
After an awesome set of 24 unplugged barside talks the evening before, Carnegie Mellon University computer sciences professor Adrien Treuille (also recognized as the first recipient of the Leland Hartwell award for Innovation in Open Networks) did not let up the pressure to think differently, and enchanted the early morning session with his online game Eterna that lets all comers solve RNA folding challenges. Covering the “Top Ten Reasons To Crowdsource,” Treuille touched on both the innovative talent and intense passion of ordinary citizens to join the scientific conversation that is usually restricted to those in the Ivory Tower.
Wrapping up the “Re-defining Roles” session that Treuille started, PatientsLikeMe CEO Jamie Heywood took things up a notch further and advocated to bring the public directly into the crafting and execution of clinical studies. For this, Heywood highlighted the “Real Names Project” that he and I will jointly lead. “Real Names” would “blow up” the current hypothesis-driven approach to clinical research and replace it with a continuously aggregating cohort of individuals (some healthy, others not) who are willing to be named and to have all of their data shared as it is being longitudinally tracked. From this, Heywood says, a longitudinal vector map of health and disease can emerge for each of us: treatment or lifestyle changes could shape the future of the map and the maps of many patients can combine to show as a society how our decisions today are likely to affect our health tomorrow. Panelist and Netherlands -based neurologist Dr. Bas Bloem remarked that longitudinally focused efforts like the Real Names Project are revolutionary and will offer much more valid answers than those currently provided by randomized trials, but will be obstructed by those entrenched with the status quo. He highlighted the Michael J. Fox foundation, known for its outstanding leadership to fund Parkinson’s research as an example of a patient foundation that has “had their best time.” In a Real Names world where patients own the data, are willing to have their name affiliated with their data and can demand that users of their data share their findings, the current power structure is shattered. Therefore, Bloem cautioned, “If we do it [Real Names Project] insidiously and in a collaborative fashion, we are facing the future.”
With Sage Bionetworks’ tools of collaboration “on the table” and the keynote speakers’ clarion call to action, meeting attendees next delivered on the promise of a “CONGRESS.” We formed 10 brigades (each populated with a moderator, scribe, group of expert anchors and participants) formed to discuss, debate and list the principles and general functionalities that could constitute the Rules of Engagement needed to re-define better models of disease. Here are some potential rules that emerged as desired:
1. Build a billion person cohort by 2020: plant many seeds to take the effort to a viral level.
2. So that research is focused on patients’ key issues, build connectivity between patients and researchers.
3. Fund and reward only those behaviors that support the building of better disease models (i.e., require open datasharing as a pre-requisite for funding).
4. Place all into the public domain.
5. Build a commons that is governed by respect, recognition of contribution, reward and responsibility.
As the Congress adjourned, virtually all were infused with excitement around the mission to help start one or more projects to pressure test the Rules of Engagement and to then report on success and lessons learned at the 4th Sage Congress that will be taking place in less than 350 days from now. If you were not one of the lucky ones there—consider a glance at the call to arms by Larry Lessig, Adrien Treuille, Jamie Heywood or the three dozen other speakers, panelists and moderators on the streaming video of the platform presentations. Their presentations are already available on the fora.tv site (search for “Sage Bionetworks” by most recent) and podcasts of Congress Unplugged! The platform talks will be available on the Congress site and iTunes next week.
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